1. Introduction and background

1.1 Between 7 December 2016 and 14 March 2017, the Scottish
Government undertook a public consultation to invite views about
possible ways of increasing the numbers of successful organ and
tissue donations.
[1] This report presents the findings from an analysis of the
responses to the consultation.

Policy context

1.2 Organ and tissue transplants can save people's lives and /
or substantially improve their health and quality of life. Although
Scotland has the highest proportion of people registered as organ
donors in the
UK (45%), there is still
a shortage of organs, and around 500 people are waiting for a
transplant at any one point. The Scottish Government is keen to
explore ways of increasing the number of organs and tissue
available for transplantation, particularly given that fewer than
1% of deaths in Scotland occur in circumstances where the person is
able to donate their organs.

1.3 At present, in Scotland, in order to become an organ or
tissue donor, a person must either express a wish to do so or one
of their relatives can authorise donation on their behalf. This
system is known as '
opt in'. In many cases, individuals make their
wishes known by joining the
NHS Organ Donor
Register (
ODR). If an
individual has not given authorisation and they could be a
potential organ donor, their nearest relative will be asked to make
a decision in the event of the individual's death. Having such
sensitive conversations with families at the time an individual
dies is very difficult, and, understandably, many families find it
impossible to consider such requests with the urgency required at a
time when they may be in shock or grieving. In such circumstances a
significant minority of families (37% in 2016-17) do not give
authorisation, although survey evidence suggests that the majority
of people in Scotland support donation.
[2]

1.4 Additionally, timely referral to a specialist nurse for
organ donation (
SNOD) or a
tissue donor coordinator by the clinical team caring for a
potential donor is an important step in allowing a donation to
proceed, as it allows specialist transplant staff to assess the
suitability of the patient for becoming an organ or tissue donor,
and to be involved in discussions with the patient's nearest
relative. Research shows, however, that this does not always
happen. Potential donors are not referred by the clinical team for
a variety of reasons, and specialist staff are not always involved
in discussions with families.

1.5 Thus increasing the number of people authorising donation,
and increasing the number of referrals of potential donors by
medical teams are both important way of maximising the number of
organs and tissues available for donation. The current consultation
explores how this might be done, and invites views on two main
approaches which might be used to increase the number of successful
deceased organ and tissue donations:

By increasing the number of potential donors,
primarily by introducing a system whereby a person is regarded as
having authorised donation, unless they have expressed a wish
not to be a donor - this is called a 'deemed
authorisation', or 'opt out' system. A
softopt out system builds on deemed authorisation,
but also incorporates additional safeguards and conditions which
might include seeking authorisation from a person's nearest
relative. Such a system has recently been introduced in Wales,
where the Human Transplantation (Wales) Act 2013 came into effect
on 1 December 2015. The consultation paper makes it clear that
the Scottish Government is willing to consider a soft opt out
system if this can be developed in a way which will not harm
trust in the
NHS or the
safety of transplantation, but it also invites views on ways that
the current opt in system might be made more effective.

By increasing the number of potential donorsreferred to a
SNOD or a
tissue donor coordinator. The consultation recognises
the importance of this step in the process and proposes two ways
of increasing such referrals: (i) by the issuing of Chief Medical
Officer (
CMO) guidance to
encourage clinicians to refer dying or recently deceased patients
for consideration as organ and / or tissue donors, and (ii) by
making it a requirement to involve a specialist nurse or other
individual with appropriate training in discussions with families
about authorising donation.

The consultation

1.6 The consultation paper outlined current procedures regarding
organ and tissue donation, and the options which might be
considered in order to increase donations. The consultation paper
was split into two sections. Section 1 considered ways of
increasing potential donors, and had a particular focus on the
option of a soft opt out system. Section 2 considered ways of
increasing referrals by clinical teams to specialist transplant
teams when they are caring for a dying or recently deceased
patient. The consultation contained 18 questions (including 5
multi-part questions) which were a mix of closed (tick-box)
questions and open questions asking respondents to provide written
comment. Questions 1 to 15 asked for views on options for
increasing potential donors, and Questions 16 and 17 asked for
views on increasing referrals to specialist transplant teams. A
final question, Question 18, asked for views on equality
issues.

1.7 The consultation was launched by the Minister for Public
Health and Sport on 7 December 2016. It was made available on the
Scottish Government's online consultation hub, and was also sent to
over 260 stakeholder groups. Respondents were able to respond to
the consultation online or they could submit written responses by
email or post.

About the analysis

1.8 Both quantitative and qualitative analyses of the responses
were undertaken, with the emphasis on the latter. Frequency
analysis was carried out in relation to all the closed questions
and the results of this are presented in tables throughout the
report. In relation to the qualitative analysis, analytical
frameworks were developed for each of the questions. The focus of
analysis was on identifying areas of agreement and disagreement
between different groups of respondents, and the main themes and
the full range of views submitted in response to each of the
consultation questions. If respondents held different views in
relation to a particular closed question, wherever possible, the
reasons given for those different views were
further explored in the qualitative analysis.

1.9 Not all respondents answered all questions, and some made
comments in relation to a question without ticking a response at
the relevant closed question. Where a respondent's answer to a
closed question was clear from the comments they made, the response
to the closed question has been imputed and included in the
quantitative tables. Irrespective of whether it was possible to
impute a response to the closed question, all respondents' comments
were included in the qualitative analysis.

1.10 This report aims to provide a balanced account of the views
submitted by respondents. However, the findings only provide a
relatively high-level summary of a range of more detailed
responses. Furthermore, given that those who took part in the
consultation were self-selecting, the findings should not be taken
as representing the views of the wider population.

About the report

1.11 This report contains 13 chapters.
Chapter 2 describes the respondents and the
responses received.
Chapters 3 to
13 present the findings of the analysis for
each of the consultation questions. Annexes to the report contain a
list of organisational respondents to the consultation, and details
of the number of responses to each question.